‘Smiles and laughter and all those really great things’: Nurses' perceptions of good experiences of care for inpatient children and young people with intellectual disability

Abstract Aim To understand what constitutes a good experience of care for inpatient children and young people with intellectual disability as perceived by nursing staff. Design Interpretive qualitative study. Methods Focus groups with clinical nursing staff from speciality neurological/neurosurgical and adolescent medicine wards across two specialist tertiary children's hospitals in Australia were conducted between March and May 2021. Data analysis followed interpretative analysis methods to develop themes and codes which were mapped to a conceptual model of safe care. Results Six focus groups with 29 nurses of varying experience levels were conducted over 3 months. Themes and codes were mapped to the six themes of the conceptual model: use rapport, know the child, negotiate roles, shared learning, build trust and relationships, and past experiences. The analysis revealed two new themes that extended the conceptual model to include; the unique role of a paediatric nurse, and joy and job satisfaction, with a third contextual theme, impacts of COVID‐19 pandemic restrictions. With the perspectives of paediatric nurses incorporated into the model we have enhanced our model of safe care specifically for inpatient paediatric nursing care of children and young people with intellectual disability. Conclusion Including perceptions of paediatric nurses confirmed the position of the child with intellectual disability being at the centre of safe care, where care is delivered as a partnership between nursing staff, child or young person and their parents/family and the hospital systems and processes. Impact The enhanced model offers a specialized framework for clinical staff and health managers to optimize the delivery of safe care for children and young people with intellectual disability in hospital.


| INTRODUC TI ON
Children and young people (CYP) with intellectual disability have higher incidence of medical conditions and associated healthcare needs than their non-disabled peers, often necessitating inpatient admissions and stays in hospital of longer length (Einfeld et al., 2011;Iacono et al., 2014;Mimmo et al., 2021;Oeseburg et al., 2011). The limited published studies on the inpatient experiences for CYP with intellectual disability, or their parent/carer, have consistently reported healthcare staff reliance on parental presence and inability to identify the needs of the child, resulting in confusion about roles, ineffective partnerships in care and poor hospital experiences (Mimmo et al., 2018;Mimmo et al., 2019). Attempts to address poor healthcare experiences for inpatient CYP with intellectual disability have largely focussed on challenges and barriers for healthcare workers in the delivery of high quality and safe care (Aston et al., 2014a;Oulton et al., 2018).
Understanding challenges and barriers in service delivery is important for health services to identify safety deficits and areas for improvement in care delivery, but has provided limited success in creating healthcare improvement due to health system complexity (Leape et al., 2009). Unlike mechanical systems, the component parts of a health care system are characterized by diversity, interconnectedness, inter-dependency and adaptation to input; they do not act in a linear way with predictable outcomes. (Hollnagel et al., 2015). A reorientation of analyses of experience towards a strengths-based approach that explores positive experiences is therefore increasingly promoted through concepts of 'positive deviance' and 'brilliant care' that is, those experiences of care that go beyond expectations (Baxter et al., 2016;Dadich et al., 2015). Our study reflects this paradigm shift in contemporary healthcare improvement research by investigating and understanding the actions and processes involved when things go right promoting learning from the presence of safety (Hollnagel et al., 2015). Drawing on these approaches, our study sought to explore paediatric nurse perceptions of good hospital care experiences for CYP with intellectual disability from nurses who work on wards that admit these children on a regular basis.

| BACKG ROU N D
Approximately 1%-3% of the global population has intellectual disability (Maulik et al., 2011). In Australia, 4.5% of children aged 15 years or under have intellectual disability (Australian Bureau of Statistics, 2018). A recent study found almost 14% of admissions to a tertiary paediatric healthcare organization were CYP with intellectual disability (Mimmo et al., 2021). These CYP also had more frequent admissions, a significantly longer median length of stay, and higher median cost of admission than their peers (Mimmo et al., 2021). At the same time, inpatient CYP with intellectual disability and their parents consistently report poor quality and safety experiences. These related to healthcare staff assumptions and lack of knowledge regarding the child with intellectual disability and their needs and preferences, reliance on parental presence and not listening to parental expertise, all of which were perceived to inhibit healthcare staff's ability to plan and adapt care delivery to the needs of the child (Mimmo et al., 2018;Mimmo et al., 2019;Oulton et al., 2018). Despite these inequities in quality and safety outcomes, increased healthcare utilization, and poor experiences of care, there remains a paucity of targeted research to explore and understand nursing insights into positive inpatient experiences of healthcare for CYP with intellectual disability using a quality and safety lens.
In inpatient settings nurses and nursing teams are the healthcare professional group most consistently in contact with patients; nurses are accessible to patient bedsides 24 h a day, 7 days a week, and are responsible for the co-ordination of day to day inpatient care delivery. Nurses and midwives account for almost half the global health workforce (World Health Organisation, 2020); in the Australian and English public health systems, nurses and midwives account for over half the clinical workforce (Australian Institute of Health and Welfare, 2020; The King's Fund, 2020), and in the United States (US) comprise at least one third of hospital employees (U.S. Department of Labor, 2020). Because of this, measures of quality and safety, and patient experiences of care are inherently biased to patient perceptions of the quality of nursing care (Edvardsson et al., 2017). Nurses report fear of caring for people with intellectual disability, identifying lack of knowledge, skills, experience and exposure to patients with intellectual disability as key factors of these negative perceptions consistently described across the international literature (Appelgren et al., 2018;Iacono et al., 2014). The few studies to date regarding the nurses' experiences of caring for CYP with intellectual disability in hospital settings report challenges with identifying and acting on the needs of the child, lack of specific education, finding time to provide care and the importance of the parent-nurse relationship (Aston et al., 2014b;Lewis et al., 2019;Oulton et al., 2018). Missing from the literature are studies exploring the perceptions and experiences of good quality care for inpatient CYP with intellectual disability from nurses who routinely care for these children, and contributions to evidence of what constitutes good experiences of hospital for this marginalized group of children.

| Conceptual model
This study is part of a broader body of work comprising the lead author's doctoral studies, exploring quality and safety outcomes, and patient experience, for inpatient CYP with intellectual disability.
Preceding this current study was the development of a conceptual model of safe care (see Figure 1) arising from a metanarrative of experiences of parents with a child with intellectual disability in hospital (Mimmo et al., 2019). Themes from the model in Figure 1 suggest positive experiences of care for parents of children with intellectual disability were underpinned by partnerships of care with healthcare staff. Central to these partnerships were staff using rapport to get to know the child with intellectual disability; negotiating roles and shared learning by listening to parental expertise to understand the child's unique care needs in hospital; building trust and relationships; and appreciating that negative healthcare experiences can impact on expectations for future healthcare experiences (Mimmo et al., 2019). For this study, we wanted to build on this conceptual model and understand how the model may be practically applied in the care of CYP with intellectual disability in an acute paediatric healthcare setting. To do this we sought the perspectives of paediatric nurses at the frontline of inpatient care delivery, focussing on good experiences of hospital care for a CYP with intellectual disability.

| Aim
The aim of this study was to understand what constitutes a good experience of care for inpatient CYP with intellectual disability as perceived by nursing staff. Our research question was, how do nurses conceptualize a good hospital experience for inpatient CYP with intellectual disability? The perceptions of nurses were then mapped to perceptions of parents to enhance our conceptual model of safe care (Mimmo et al., 2019).

| Design
An interpretive qualitative study design was used for this study (Sandelowski, 2000). Using qualitative inquiry to derive evidence of the 'how to' from those who have expertise in the practice of the healthcare delivery under study, in this case paediatric nurses who routinely care for CYP with intellectual disability, will give clinical and practical relevance to the findings (Leeman & Sandelowski, 2012).

| Sample/participants
Clinical nursing staff from two speciality neurological/neurosurgical and two speciality adolescent medicine wards across the two specialist tertiary children's hospitals of a single paediatric healthcare organization in Australia were invited to participate in the focus groups. Our purposeful recruitment strategy in these specialist wards sought to explore and capture data from nurses who routinely delivered inpatient care to CYP with intellectual disability, and would therefore likely have many instances upon which to draw.

| Method
Focus groups were conducted to explore perceptions of good care experiences for inpatient CYP with intellectual disability, asking paediatric nursing staff to reflect on their experiences of providing good care and determine what constitutes good experiences of hospital care for this group of children. The use of focus groups encourages participants to bounce ideas and thoughts off each other and can support others to contribute thoughts on their shared experiences (Pope et al., 2002) which may otherwise not have occurred during a one on one interview. The power of focus groups is through fostering co-created meaning and 'collective sense-making' as participants discuss their experiences between themselves and the facilitator (Wilkinson, 1998).

F I G U R E 1 Conceptual model of safe care for a child with intellectual disability in hospital
The perceptions of the nursing staff were mapped to the conceptual model of safe care, following the Framework method described below (Gale et al., 2013). This was to inform enhancements to our conceptual model of care and future clinical education programs regarding improving care quality in the hospital setting.

| Procedure
Focus group dates and times were pre-arranged with each ward nursing unit manager (NUM) and ward based clinical nurse educator (CNE) to minimize conflicts with clinical duties, enabling attendance for those with a mainly clinical workload. In consultation with each ward NUM and CNE the optimum approach agreed was to conduct the focus groups during the ward's routine in-service time. Where necessary to comply with Public Health orders regarding public gatherings the facilitator conducted the focus groups using an online videoconference platform, Zoom™.
At the beginning of each group the lead author explained the purpose of the focus groups, introduced the facilitator, and ground rules were established. Prior to commencing the focus groups the purpose and topic guide was discussed between the lead author and the two facilitators, who are health services researchers but not clinicians. Additional prompts and probes were added to reflect some nuances of the health service. The first focus group was conducted by one facilitator with the other as an observer for consistency in how the groups would run. The participants were asked to reflect on their experiences of providing inpatient nursing care to CYP with intellectual disability, and what they perceived to be good experiences for these CYP. The topic guide template used across the focus groups is attached as supplementary file one (Appendix A).

| Ethical considerations
Ethical approval for this study was obtained from the organization's Human Research Ethics Committee, reference number: 2019/ ETH13465. Support from the site based Directors of Nursing and NUMs was sought for recruitment of staff participants, including distributing information sheets during department meetings and via department emails; paper copies were available in the NUM's office a minimum of 1 week before each scheduled focus group. Written consent was obtained from all participants at the time and prior to commencement of each focus group. To maintain anonymity of focus group participants the audio recordings were sent directly for transcription by a professional service. These transcripts were then used for analysis.

| Data analysis
Our analysis was inductive and iterative, and undertaken over two phases. In the first phase the data analysis followed the analytical steps recommended for Interpretive Phenomenological Analysis (IPA) methodology, ideal for sense-making of lived experience data (Smith et al., 2008). Detailed and iterative analyses of transcripts are done on a case by case basis, hence small samples are recommended (Smith & Osborn, 2003). The lead author engaged in immersion of transcripts of the focus groups through repeated reading and then writing of initial codes and themes for sense-making of the participants' stories of good experiences of care, and conducted initial interpretive analysis of the transcript of the first focus group.
One or two focus groups were conducted with each ward, with the option of further groups if new concepts and themes emerged for further exploration. However, after six focus groups were conducted across the four wards it was agreed between the lead author and the two focus group facilitators that data saturation had been achieved through the collection of both thick and rich data with consistent themes across focus groups (Fusch & Ness, 2015).
Shortly after the final focus group the two facilitators reviewed the transcripts independently and met with the lead author to review the initial codes and themes developed. The remaining authors read the transcripts independently and then met with the lead author to review and agree on the codes and themes. The codes and themes were then discussed at length between the lead author and focus group facilitators before being reviewed and refined further through discussions with the broader authorship team. Using IPA we were able generate the initial codes and themes that encapsulated the unique perspective of the nurses.
In the second phase we applied the Framework Method, described by Gale et al. (2013), to map the codes and themes to the current conceptual model and identify novel themes. The six components of the conceptual model made up the Framework rows; each focus group was classified as a case and codes applied within and across the cases (Gale et al., 2013). The codes and themes were grouped into those that aligned with the conceptual model and themes that were significant but sat outside the conceptual model, classified as orphan themes. This process was then followed for the subsequent focus groups, with each transcript considered on its own, then against the other focus groups, as per IPA methodology.
The codes were then themed and mapped according our conceptual model of safe care (Figure 1), branching out from each arm, see

| Validity and reliability/rigour
In discussing validity and reliability/rigour, we draw on the work of Mays and Pope (1995) and Morse's critique of determining rigour in qualitative studies (Mays & Pope, 1995;Morse, 2015). Rigour was ensured by seeking thick description, awareness of bias and closeness to the data, peer review and reflexive practice. Thick description was achieved through our participant sampling strategy and use of focus groups with specific wards that routinely care for CYP with intellectual disability within the same healthcare organization.

| Reflexivity
As the lead author is a registered nurse employed within the clinical governance unit of the healthcare organization the focus groups were facilitated by university research staff with contingent staff appointments with the healthcare organization. Appreciating the lead author is close to the data and research topic, from a professional and research perspective, it was important to both acknowledge this bias while leveraging the lead author's common standing with the participants to establish trust. Peer review and debriefing between the research team was conducted throughout the analysis and write up of the findings. A summary of the findings has been shared with the ward NUMs and nurses who participated and requested a summary, along with the organization's nursing executive team. Pillow (2003) notes reflexive practice 'as critical to exposing the difficult and often uncomfortable task of leaving what is unfamiliar, unfamiliar' (Pillow, 2003, p. 177). Researchers decide what is included in the description (Sandelowski, 2000); applying reflexivity to do this is challenging, it requires a fine balance (Pillow, 2003).
The lead author is an experienced paediatric nurse with clinical and research interest and skill caring for CYP with intellectual disability, who had, at the time of the study, been working for the organization for almost 12 years. To mitigate the potential impact of the lead author's familiarity with the participants, their practice and clinical context on the frankness of focus group discussions the lead author was not present while the focus group discussions took place. In addition, the focus group facilitators emphasized that the aim was to share and celebrate their experiences of good care delivery. To promote reflexivity the lead author maintained personal notes during the period of analysis, noting the thoughts and reflections that arose when reading the transcripts, and discussed these at length with the authorship team.

| FINDING S
A total of six focus groups were conducted between March and May 2021 with 29 nursing staff of varying seniority and experience from the four speciality wards. Duration of focus groups varied from 26 to 43 min. Nursing staff participating included Endorsed Enrolled Nurses (1), Registered Nurses (18), new graduate/Transitioning Registered Nurses (1), Nursing Unit Managers (1), Clinical Nurse Educators (4), Clinical Nurse Specialists (1) and university nursing students (3). Focus group sizes ranged from two to ten participants and we did not collect details on age, gender or years of experience.
Our findings are presented against the six components of the conceptual model (see Figure 1); use rapport, know the child, negotiate roles, shared learning, build trust and relationships, and past experiences. For each component theme we have included a table of codes and key extracts from the focus groups as they relate to each theme.
In addition, we identified three new themes. Two of these themes extend and enhance the model; the unique role of a paediatric nurse, and joy and job satisfaction. The third theme reflects the context F I G U R E 2 Mapping themes to conceptual model when the focus groups were conducted; impacts of COVID-19 pandemic restrictions. These themes are presented after the conceptual model themes with a table summary of key extracts related to these new themes. We then present our enhanced model of safe care for a child with intellectual disability in hospital.

| Use rapport
In all the focus groups the participants agreed that using rapport to build familiarity with a CYP with intellectual disability helped the child feel safe and comfortable in hospital. The groups identified the importance for nurses to use play and rapport to form connections with CYP where they had had some distressing experiences. Some of the discussion suggests the nurses felt these connections supported a CYP with intellectual disability in coping with challenges during hospitalization. It was clear that these connections also brought joy to the whole nursing team, not just the nurses directly involved in a child's care.
While specific policies and procedures were not identified for caring for a child with intellectual disability, one group suggested policies may help guide inexperienced nurses to involve parents and use play for rapport to get to know a child with intellectual disability. Key focus group extracts related to this theme are presented in Table 1.

| Know the child
The nurses agreed that knowing a CYP had intellectual disability, especially before arriving on the ward, allowed them to prepare and adapt their care delivery to suit the CYP's needs. The nurses described ways in which they used knowledge of a CYP with intellectual disability to facilitate care planning, arrange for specialized equipment, and make adaptions to the ward environment to optimize safety and quality.
The nurses identified that not being able to get to know a child because there was no carer was problematic, particularly if a child was in discomfort, and the nurses sought other ways to find out about the child. The nurses also recognized the importance of knowing the needs of a CYP with intellectual disability to optimize their care, in particular their method of communication, and used various strategies to capture key pieces of information from parents/carers. Across the focus groups getting to know the CYP with intellectual disability recognized their innate humanity. They felt it was important to treat a CYP with intellectual disability as a human being; preserving dignity and advocating for the child, particularly when managing pain and end of life, and using empathy and compassion. Key focus group extracts related to this theme are presented in Table 2.

| Negotiate roles
Nurses described negotiations with parents to come to mutual agreement on the care needs of their child as part of their family and child centric approaches while others espouse that the prevailing practice in the unit was the family centric model. For some nurses having a parent or carer at the bedside to 'help us look after them' was how they practiced family centred care, and seen as a marker for ensuring a good experience for a child with intellectual disability. The parent/ carer was available to tell them what their child needed and so they could help attend to the child's daily care needs. For some nurses not having a parent or carer at the bedside was considered 'bad' as it 'ruins everything'; others recognized their role in supporting parents, as there may be additional or conflicting responsibilities for parents to manage on top of their hospitalized child.
Descriptions of role conflict arose when nurses described trying to negotiate a child's care needs against the needs and capabilities of the hospital/organization. Senior nurses described how, as they gained experience, they would use their clinical judgement to negotiate and prioritize the care needs of a CYP with intellectual disability against their clinical responsibilities. All nurses viewed the time constraints on their practice and hospital routines as contributors to poor care quality experiences for CYP with intellectual disability, and identified how this may also worsen a child's medical condition and cause unnecessary stress.
As above, nurses reported conflict in their role to provide the attention and time the child needs, such as play and company, versus TA B L E 1 Use rapport; key extracts from focus groups

FG4
to give each child the best experience, acknowledging that some bonds are stronger than others and that the ward manager has an important role in advocating for the team and patients. Nurses in one group also wanted the organization to listen to them, and trust their expertise and knowledge of the needs of CYP with intellectual disability.
One group shared a story about a long term patient who the whole team get to know, and how as a team rallied together to give this child a good experience, to feel comfortable and safe. The team recognized that although the admission had been difficult, it was important that the child had a good experience of care. Key focus group extracts related to this theme are presented in Table 5.

| Past experiences
The conceptual model refers to past hospital experiences for CYP with intellectual disability and their parent impacting on subsequent hospital experiences. For staff, the concept of learning from past experiences means they appreciate the need to plan for admissions, and, as in the second theme, know the child and their needs so the ward can prepare for the admission beforehand. Having knowledge of previous admissions and individual information documented in the medical record, particularly when the child had not been admitted to the ward before, was also helpful for optimizing the child's comfort during hospitalization.
For senior nurses, they also drew on their own past experiences of nursing CYP with intellectual disability to generate ideas for optimizing care and patient experience. They also identified that a good experience today for a CYP with intellectual disability can help reframe expectations of hospital and make for better future experiences. Being able to draw on past experiences also extended to optimizing patient safety by advocating for escalation of treatment and care, particularly in the context of a deteriorating CYP with intellectual disability.
Negative past experiences were also identified, and one group discussion revealed that having psychological support helped staff to cope with distressing events and return to work. Using past experiences to learn and improve, through parent and patient feedback was also identified. Key focus group extracts related to this theme are presented in Table 6.

| New themes
The analysis identified additional codes and themes across the transcripts that extended beyond the conceptual model; the unique role of a paediatric nurse, and joy and job satisfaction. These two themes are discussed below with a summary

| Enhanced model of safe care for inpatient children and young people with intellectual disability
The group discussions confirmed and identified possible extensions to the conceptual model of a good experience of care that creates safety for CYP with intellectual disability in hospital, in the context of inpatient tertiary paediatric healthcare specifically (see

FG3
Participant: When you save positive feedback from families or they comment on how well we work as a team and how happy their child is in our surroundings on ward.

FG4
safe care, where care is delivered as a partnership between nursing staff, parents/family and the hospital systems and processes.
In Box 1, we share a story from one group demonstrating how our enhanced model is applied in a single encounter that encapsulates the joy in paediatric nursing care experiences with a child with intellectual disability. impact on care quality. A recent scoping review of burnout in paediatric nurses found feelings of accomplishment in paediatric nurses was associated with mother satisfaction with meeting child's care needs (Buckley et al., 2020). Furthermore, Oulton et al. (2015) found that staff taking time to find out the 'little things', particularly nonmedical needs, about the CYP with intellectual disability may optimize the quality and safety experience of hospital.

| DISCUSS ION
In some groups partnerships with parents were discussed in the context of family centred care (FCC), as a framework for their practice though many of the stories from the nurses in our study were primarily child-centric. FCC is described as care that is planned and coordinated around the needs of the family rather than the child/ person (Coyne, 2015;Jolley & Shields, 2009;Watts et al., 2014).
Despite the popularity of FCC, evidence of its effective implementation for optimal paediatric healthcare remains inconclusive, particularly where the principles are misunderstood (Coyne, 2015;Kuo et al., 2012;Watts et al., 2014). A critical challenge to FCC is the focus of healthcare shifts away from the child, to the parent and family (Mattsson et al., 2013). For example, while most nurses in our study agreed role negotiation, shared care and partnerships were part of effective FCC, in one group the nurses flagged an expectation for the parent to be at the bedside for FCC to occur. Conflicting use of FCC is in line with other studies exploring hospital care from the perspective of paediatric nurses and parents of CYP with intellectual disability (Aston et al., 2014a(Aston et al., , 2014bOulton et al., 2015). The enhancements to our conceptual model confirm the underlying nursing focus; with the child is in the centre of a care partnership, the child's individual needs are at the centre of the care experience.
Our findings repeatedly demonstrate that experienced nursing staff recognize the importance of past experience(s), including preregistration training and education, and clinical exposure to build care partnerships to optimize the delivery of high quality care of hospitalized CYP with intellectual disability, and this is readily discussed across the literature (Breau et al., 2018;Lewis et al., 2019;Oulton et al., 2015). Furthermore, parental healthcare seeking behaviour, particularly their choice of health services for their CYP with intellectual disability may be influenced by past experiences and relationships with health professionals. Parents of CYP with intellectual disability value and will utilize services where healthcare staff value relationships, partnerships and continuity of care with the parent and child, and have knowledge of their child's disability (Fereday et al., 2010;Smith et al., 2015). The lack of experience, knowledge and training on the part of health professionals contributes to poor experiences (Iacono et al., 2014). By incorporating the practice based knowledge of nurses employed in children's hospitals into our conceptual model we illustrate how the nurse-parent-child partnership is developed in practice, when caring for CYP with intellectual disability in a tertiary children's hospital.
A key strength of our study is using qualitative inquiry with a positive deviance approach to explore paediatric nurse perceptions of good experiences of care. As the nurses in this study noted, paediatric nurses do not often take opportunity to reflect on the good things in their work; the nurses consider their interactions with children and parents as 'just what we [paediatric nurses] do'. Furthermore, it was the supportive dynamic created through the focus group format that enabled the sharing and co-construction of the nurses' stories of good care experiences that gave us the rich data in this study (Kitzinger, 1994). Perhaps one of the most delightful findings from the positive deviance approach using of focus groups were the feelings of joy that the paediatric nurses in this study expressed about their past experiences caring for CYP with intellectual disability; the nurses consistently talked of seeing 'smiles', the laughter, tears of joy for the smallest achievements of the children in their care. The authors found the focus group discussion to be especially valuable for revealing these joys.

| Limitations
The participants in this study were all nurses from a single paediatric healthcare organization with two tertiary children's hospitals in the same metropolitan city. While this was intended, the experiences for paediatric nurses working in children's wards situated in adult tertiary or district hospitals, or experienced paediatric nurses who are not frequently exposed to CYP with intellectual disability, may have difference perspectives that were not captured here. In addition, our study was conducted during COVID-19 pandemic and this may have influenced the stories and experiences of the participants. However, we believe this context also produced some of the rich stories, as the nurses were able to reflect and describe how they adapted care for CYP with intellectual disability when their usual resources, such as play rooms, toys and ward volunteers were limited.
As a research team, we were looking for themes that would align with our conceptual model; focusing on this aim during our analysis risked that we would miss other important concepts, negative cases or orphan themes. This was managed by using a two phased approach to the analysis, IPA and then Framework analysis. In this way we were able to identify important concepts and themes that sat outside the model. We then used the Framework method to map themes to the conceptual model and use the new themes to enhance the model for clinical application.

| Recommendations for practice
The model presents a practical guide for new graduate nurses, or those with minimal experience caring for CYP with intellectual disability. For nurse managers, health service managers and policy makers, the model may serve as a framework for assessing and advocating for the day to day needs of their wards, staff and patients, and when developing and revising policies and procedures to guide staff in the delivery of safe care for CYP with intellectual disability in hospital. Finally, the enhanced model poses an opportunity for health services to look beyond current indicators of safe, quality care and look to using the model as a basis for patient experiences of care partnerships for inpatient CYP with intellectual disability.

| CON CLUS ION
This study used focus groups to explore perceptions of care experiences of care from paediatric nurses with experience caring for CYP with intellectual disability in hospital. The findings highlight the importance of developing partnerships with parents for safe care, and the significance of using play to develop rapport and taking time to become familiar with the needs of the CYP to optimize the quality and safety of hospital care. We have used the findings from this study to elaborate and enhance our conceptual model of safe care for CYP with intellectual disability, centred on the child and their care experience with a focus on quality and safety. Enhancements to the model reflect the unique role of a paediatric nurse in providing specialized inpatient care for CYP with intellectual disability, and the joy and job satisfaction this specialized role brings.

ACK N OWLED G EM ENTS
The authors thank the nursing workforce of The Sydney Children's Hospitals Network, in particular the paediatric nurses who took the time to participate in the focus groups and share their experiences, the Nursing Unit Managers who supported the nurses to attend and

CO N FLI C T O F I NTE R E S T
No conflict of interest has been declared by the authors.

PE E R R E V I E W
The peer review history for this article is available at https://publo ns.com/publo n/10.1111/jan.15256.